TS Awareness Continues

Continuing with Tourette Syndrome Awareness Month, I posted this on my Facebook page this morning.  

In  Gerry's case, he inherited the condition from me.  Males are also affected 3 to 4 times more than females, so that's two strikes against him right from the get-go.  Back when I was pregnant with him (and, truthfully, right up until he was diagnosed), the thought that I could "pass down" my TS to one or more of my kids had never entered my mind.  I was so used to living with it and my family had never made a big thing of it, that I just never really thought about it.  So much so, that the fact that it can be an inherited condition never occurred to me.  I'm pretty sure his anxiety and OCD tendencies were also passed down from me.

My case is a bit different.  As far as I know, I'm the only one in my family to have it.  Or, at least, to have been formally diagnosed with it.  I don't know the health history on my mom's side, but I'm almost positive that no one on my dad's side has TS.  We spend a lot of time together and in my years I've never noticed anyone ticking or doing anything TS-related.  I have what is called "Sporadic Tourette Syndrome", meaning I didn't inherit it from anyone...there's just a sporadic gene mutation that resulted in my having TS.  Which is kind of neat when you think about it.  

As far as my other kids, I'll be interested to see how it all plays out.  Bailey is almost 10 years old and not displaying any signs or symptoms of TS.  Lincoln just turned 4 and, though I know he's at a higher disadvantage when it comes to inheriting the disorder (being my kid AND a male), he's not showing any signs either at the moment.  It's definitely something I look out for, though, if for no other reason than to make sure I get him the appropriate kinds of help if needed.  

Tourette Syndrome Awareness Month

May 15th to June 15th is Tourette Syndrome Awareness month.  I've been posting a bit on Facebook each day, and thought it might be helpful to post here, too.  This morning, I posted this:

This is Gerry.  I posted last week about starting medication for what the neurologist thinks is ADHD.  He also shows signs of OCD and anxiety.  Still ticking away most days, but those are less worrisome (to me, anyway) than the behavioral/emotional issues.  We're still new to all this, but taking it a day at a time, a tic at a time, a moment at a time.  I don't think we'll ever have a complete handle on TS, either Gerry's or mine, but I'll keep things updated here.  :-)

We're Medicating...

It's been a really strange few months.  The Coronavirus pretty much took over the US and we've been in quarantine in one form or another since mid-March.  Overall, it's been pretty wonderful for our family (though, this takes NOTHING away from those suffering or having a hard time).  But it means that the kids have been out of school since March 13th, and they won't be going back this year.  The kids are loving it, but I know going back is going to be hard, especially on Gerry.  They've been doing distance learning, which means that their teachers email lessons every morning and the kids have to complete them from home. Which makes me the teacher.   

Gerry is incredibly smart.  He's in first grade right now and reading at an almost third grade level.  He picks up on new material very quickly and the only issue he has these days is with writing.  He hates to do it, so he fights me tooth and nail on it.  Intelligence aside, I don't think Gerry is thriving with distance learning the way he did in the classroom.  He gets distracted  and frustrated easily, and his tics have been more prevalent during our home school lessons.  His teacher continues to tell me that she's not seeing any ticking or behavior issues at school, but you can't miss it when he's at home.  I reached out to his neurologist and she agrees that he's showing signs of ADHD.  She suggested we start medication since we can really watch and see how it affects him since we're all home together.  Scott and I talked about it and gave the go ahead to start him on Clonidine.

Here's the thing.  Clonidine is the same thing as Catapres, which is what I took for my TS as a teen.  Mine was a patch and I hated it.  It helped my tics some, but I was a zombie.  I slept so hard and so much on that medication that the few years I was on it are still a blur to me.  I would pass out in the middle of the day, at my desk in school...there was literally no stopping it.  I didn't want Gerry to have to deal with that.

His sleep was kind of crappy, too.  He'd take melatonin every night, fall asleep for a few hours, and then be up watching tv at 2-3 in the morning and wouldn't go back to sleep.  Didn't matter how much melatonin we gave him.  It was like his body just didn't require the sleep that the rest of us do.  So his neurologist said that the Clonidine would help with that as well.  We started him on 0.1mg of Clonidine to be taken before bed at night.  After more than a week, we weren't seeing a difference at all in sleep or behavior and his tics were still the same.  Over the course of a month, at the neurologist's recommendation, we switched dosage, time of day taken, and considered switching meds altogether.   Ultimately, his neuro bumped him up to 2 pills (0.2mg) to be taken in the morning.  We tried that for a week before switching back to nighttime.  He was falling asleep for hours at a time during the day.  After he fell asleep at the table in the middle of a school lesson, I emailed the neurologist and told her we were switching back to taking the meds at bedtime.  It's not helping with sleep, really, but he's slightly less distracted and hyperactive during the day, and I'll consider that a win.

He had a rough few days in the beginning because it was the very first time he's ever had to swallow a pill.  But once he got the hang of it there was no stopping him, and he's a total pro now.  I'm not sure how long we'll continue on this path, but it's working for us for now.  

Pre-TS vs Post TS

Honestly, I don't even know if this is Tourette's-related, but it's something I wonder about often.

Before he was diagnosed, Gerry was this crazy, goofy, kid who lived to make people laugh and went out of his way to be silly.  He had a confidence and a brazenness about him that made him more likeable than ornery, and I never worried about him making friends.  He was awarded the "Class Clown" certificate in pre-k, which should tell you a bit about his personality.  Most of the photos of him pre-Tourette Syndrome look like this.

Always that goofy grin, the crazy poses, the complete and utter joy and hilarity that he found in life.  It was always present in photos.

And now...

He's different.  He's quieter and more withdrawn.  He's nervous in most social situations.  He's still silly and goofy at home, but it doesn't carry over into other parts of his life the way it once did.  When we're out and about, especially at school functions, he prefers to stay glued to my side instead of playing and hanging out with his friends.  He gets quiet around adults that he's known most of his life.

Last week, he and I went to a spaghetti dinner at school.  Since I'm on the PTC, I was there to "work" and couldn't actually sit down and eat with Gerry.  He asked me to walk with him through the line to get his meal, and I set him up at a table right in front of where I'd be working so that he could see me.  His friends were sitting just 2 tables down, but he didn't want to sit with them.

At one point, I needed to carry a large cake back into the kitchen and help cut and plate it before carrying it back out to the cafeteria.  I was in the kitchen for about 10 minutes.  No big deal.  I brought the sliced cake back out to the cafeteria and glanced toward Gerry while I organized the plates.  He was looking down at the table with his head leaning on his left hand.  To anyone else, he looked like a kid who was bored or maybe tired.  But I noticed that the tips of his ears and the back of his neck were red and he was sitting kind of rigidly.  He wasn't bored, he was upset, and he was trying his hardest to hide it.

I walked over and sat down next to him and asked if he was okay.  He nodded quickly and a single tear fell on his plate.  "Ger, what's wrong?" I asked.

It was like that question broke the dam and he just lost it.  He leaned into me and cried and cried while I hugged him, and I finally got it out of him that he thought I'd left.  9 months ago, this never would have been a problem.  He'd have run off to the playground with his friends or walked across the room to any one of the adults that he's known for the last 4 years and ask them where I was.  I wouldn't have had to stay in his line of sight all night, and I wouldn't have had to let him know if I was leaving the room.  He simply wouldn't have cared, confident in the fact that we came together and we'd leave together, regardless of what we did in between.  Today, he stays put and he cries by himself.  Today, I have to tell him that I'm going to run back into the kitchen for a few minutes and I'll be right out.  I have to check in so that he knows I'm still there.

But I forgot.

And it broke my heart to see him crying and scared.  "What would you have done if I hadn't come back out when I did?" I asked him.  "Would you have gone and asked Miss Jess or Miss Rea where I was?  Or looked for Mr. B (the principal) or anyone else you know?"

He wiped his eyes and said, "I would have just stayed here and waited for you to come back."

I can't adequately put into words the way his line of thinking broke my mommy heart.  I just keep picturing him sitting all by himself at that table, crying, but being too scared or nervous to ask someone for help in looking for me.  And I truly believe that, had I not come back, he really would have stayed put and waited for me.

I don't know if this is a Tourette's thing or not.  All I know is that pre-TS my Gerry would have spent that entire event, any event, playing with friends and running around like all the other lunatic 7 year olds in the building.  Post-TS Gerry needs to know where I am at all times or he panics.  He prefers to stick close to me and let his friends run around without him.  That crazy, noisy, silly boy has disappeared a bit and I miss him.

It's Been Quiet

One thing that I've read over and over again is that tics wax and wane and change often.  This seems to be the case with Gerry these days.  His tics have been few and far between, mostly unrecognizable, for the last few weeks now.  The only noticeable tic he has is his whistling tic.  No crazy animal noises, no screams, no neck jerking or facial twitches.

It's been..."normal".  Quiet.

Since his diagnosis, his tics had been on an upswing, with seemingly at least one new tic every day.  I'd gotten so used to the strange twitching and constant noises that it seemed weird (and very noticeable) to me once his quieted down.

I'm not sure how long this will last, or if he'll bust out with a new, crazier tic one of these days.  As with all things TS, we're just along for the ride at this point.  :-)

Happy 7th Birthday, Gerry!

Our CBIT Experience

At the recommendation of our neurologist, Scott and I met with a CBIT therapist last night.  The goal of Comprehensive Behavioral Therapy for Tics (CBIT) is, in a nutshell, to train patients with tics to do a competing behavior when they feel the urge to tic.  Most of what I've read online and in my facebook groups says that CBIT is difficult for some patients, especially young kids like Gerry, but that there is some success with it...for some people with tics.  The biggest "focus" of CBIT is on displaying the competing behavior when you feel the need to tic.  However, most young kids don't have or recognize the premonitory urge that comes before their tics and, therefore, won't recognize when one is coming on.  Which kind of negates the entire point of CBIT.

The therapist was very clear and upfront about the fact that she didn't think CBIT was the right approach for Gerry at this time (because he's so young), but she does think that some form of behavioral therapy is a good idea for him.  He's been bullied a few times in school because of the noises he makes and both the neurologist and the therapist are in agreement that he needs the tools to be able to (a) recognize when he's being bullied and that it is wrong, (b) tell the person that he's not making noises to annoy them but because his brain makes him do it, and (c) tell a teacher or adult when the bullying occurs.  None of which he's done successfully so far.

So here we are.

When we entered her office, the therapist asked us to tell her a bit about Gerry.  How old he is, what he's like at home and at school, his personality; basically, anything we wanted to tell her about him.  I let Scott take the lead on this one, partly because I was legitimately curious as to how he would describe Gerry to a stranger and partly because I knew I could talk the entire session about my kid and I didn't think anyone would appreciate that.  So Scott talks about Gerry being sweet and creative and crazy and I interject here and there, mentioning that I'm concerned that he's been displaying some ADHD behaviors at home.

{sidenote: I also mentioned this concern to the neurologist but, because he's displaying this behavior at home only and not (to our knowledge) at school too, there's not a whole lot anyone can/will do as far as an official diagnosis for it}

The therapist confirmed that Gerry seems to be exhibiting ADHD behaviors (at home), which was both unsurprising and also a relief to have confirmed by a professional.  It's a known fact that Tourette Syndrome goes hand in hand with a lot of other conditions, ADHD, OCD, and anxiety being the most common comorbid conditions.

So.  We talked a bit more about what we wanted for Gerry going forward.  Because his tics aren't hurting himself or others and they're not super disruptive to his life, we don't want to medicate him right now.  We want to give him the tools and the knowledge to understand his condition and to be able to explain to others if and when it becomes more noticeable to them, and the therapist made a great point in that it's important for us as a family to be able to understand it better and kind of learn how to navigate the different symptoms and behaviors that arise because of it.  A lot of the behaviors that we're seeing at home, to an outsider, could be viewed as Gerry being "bad" or an instigator or just generally a pain in the ass.  In reality, some of it is just him being a 6 year old boy...but a lot of his behavior is directly related to his TS.  The therapist continued talking about Gerry's behaviors and then she said:

    "Some kids just come into this world with challenges.  They're not any better or worse than "easy kids".  But being the parent of a challenging child is really hard, and a lot of people think it's because of the parents.  It's not.  And it's important that you understand that.  His challenges are not a reflection of you as a parent."

You guys.  I started crying.  Right there in the middle of the office.  Like, crying to the point that I couldn't talk.  Because, until she put a voice to it, I hadn't realized how badly I needed to hear someone say that.  Being the parent of a challenging child is hard.  It is so fucking hard.  And exhausting.  And humbling.  And so many people in my life have made me feel like his challenging behaviors are a direct result of how I parent him.  I can't tell you how many times I've heard some variation of "A good smack in the ass would nip that right in the bud" or "He's lucky I'm not his parent because I'd have smacked his butt by now" or "Give me three days with him, I'll send him back to you a new kid".

He is not a bad kid.  And I don't want a "new" kid.

He is sweet and funny and creative and smart and thoughtful and polite, and I wish that the whole world got to see him the way that I do.  He's not bad.  He has a syndrome and, as a result of that, he has some behaviors that are annoying and impulsive.  He makes bad choices sometimes.  A lot of times.  But he's not bad.  And I'm not a bad (or lazy or pushover) parent because I can't and don't force him to bend to my will.  Truthfully, Lincoln's not an easy kid either.  But I'm so done letting other people make me feel guilty because my kids aren't quiet and easy and always well-behaved.  And I'm so damn thankful for the therapist who helped me realize that this is okay.

So, CBIT may not necessarily be the right approach for us right now, but we're definitely going to stay on for the behavioral therapy aspect, and maybe we'll give CBIT a try down the road.  In any case, there's a certain feeling of freedom that comes with packing away some of the "mom guilt" in all of this.  And, believe me, there's a lot...but that's a post for another time. :-)